Making the Decision to Possibly Harm Your Child in Order to Help Him

I woke up this morning with a tightness in my chest, my head throbbing. I didn’t have to guess at the cause, I knew it. All night Isaiah had been tossing and turning, and in those few moments when he was motionless I would put my hand on his chest to make sure he was breathing. The epinephrine making him restless, the triple dose of Benadryl making him tired. Several times in the night he woke up like a traveller lost in the desert croaking for water. Worried I would not be there when he needed me, I only ever half-slept. I don’t know what added to the anxiety the most, googling anaphylactic shock, or googling the side effects of epinephrine

This wasn’t the first time. The first time he went into anaphylactic shock from allergy shots was September 12, 2012. You can read about that here.

We knew it could happen.

His doctor used to joke that if anyone was going to be allergic to something it would be Isaiah. Yet, the understanding was, it is extremely rare, although possible, to have an anaphylactic reaction to allergy shots. Rare. But possible. Rare. But possible, three times?

I’ve often said Isaiah doesn’t like to follow the rules. This time, he really broke them. The rule is, wait 20 minutes to make sure you are OK, then leave the office. We follow that rule. We actually stay 25 just for good measure. So imagine my surprise when as we are walking into Grocery, a 20 minute drive from the Doctor’s office, Isaiah says, “Hey mom, look at this, as he’s scratching at his side.” I took a deep breath, I looked, and sure enough a little patch of hives were cropping up. I pulled him aside and proceeded to check other body parts. I was not disappointed, hives were appearing before my eyes, on his neck, on his arms, on his back and his face. I didn’t even bother with his legs. I calmly told him we were going back to the car. For one of the first times, I had left the Benadryl, the epi-pens and my cell phone behind. In the car, he popped a Benadryl, it’s practically candy to him. I called the Doc. The response? We had to come right back. “Are you sure?” “You need to come right back.” The nurse said a little more forcefully. Isaiah began to freak. I made the mistake of panicking the last time this happened, and I think I may have damaged him a little. But in between begging not to go back and me trying to calm him, and drive without panicking, he informed me of two things, and I witnessed one other. He was getting tired, he was getting queasy and he was beginning to cough. Not only did we have the trifecta necessary to qualify as anaphylaxis (when you add in the hives), we had one more, a superfecta. Man is it hard to stay calm when the end result of untreated anaphylaxis is death.

We arrived safely at the Doctor’s office. Isaiah was calm, this place is a second home to him, and he is always the life of the party. After checking his vitals the anaphylaxis was confirmed, and the treatment is epinephrine with a “let’s help it out” mega-dose of Benadryl. I have to admit I couldn’t really read the Doc. I mean, he seemed concerned to me, very calm with Isaiah and no-nonsense but he also seemed determined. The allergy shots were working. The boy who was once so allergic to cats that being at my mother’s house for more than 20 minutes was always a crapshoot, could now stay there for hours on end with relatively mild symptoms. They were working. They were working and although this was his third anaphylactic reaction, we dealt with it, he was fine and if I felt up to it, he wanted to continue the shots. How could I say no? These shots were curing my son’s asthma. My choices: Anaphylaxis I was aware of and could treat because of my diligence? Or dying on a soccer field from an asthma attack at 15 because he’s too cool to carry an inhaler?

On the ride home, Isaiah was happily singing in the back seat. The kid he always is, almost completely back to normal. Chattering non-stop, singing non-stop. Admittedly, feeling a little tired, and wishing to watch a movie when we got home. I think he was milking that one a little. This boy who I describe as a rambunctious, fun-loving, thrill-seeking, gun-toting, fire setting boy. The boy who has never broken a bone, needed stitches or even had to visit the hospital for an injury, is brought to his knees by two tiny injections. The tears rolled down my face. My baby boy. My strong boy. Strong? What exactly did that mean? How can he be strong, an hour ago he was so fragile. His face ashen as his blood pressure dropped, his body failing to do his bidding as the epinephrine worked through his system. That realization, that without the miracle of modern medicine, my son would not have even survived to this day, let alone this day.

It is at these times I reach up. I remind myself that God has a plan for Isaiah. I believe he will do great things. But then I am plagued by self-doubt. I think of all of the families who have lost a child. So many, so many I actually know. Didn’t they think that? Didn’t they think not my child, my child is destined for something bigger? Then I wonder if that destiny is to teach us something, a lesson to be learned if his time comes sooner than we expected.

I can’t go there. I can’t. I have to leave that alone. I can mourn for the people I know who have lost their little ones, I can mourn for the people I know who’s little ones are struggling with life threatening diseases. Isaiah does not have a life-threatening disease. He has a life threatening condition. There is a huge difference. I have to suffer through one or two sleepless nights. I have to be diligent, always. I do not have to assume that his end is in sight. I am thankful. I am thankful that he is mine, and that I will do whatever it takes to ensure his safety. I am reminded, oh how I am reminded, that life is a gift. Please, do not read that as a cliché. Life is a gift people.

In the morning I looked at him differently. I hope this will stick. I looked at him with new eyes. I looked at him with complete acceptance, with unconditional love and with pure joy. Ask anyone, I doubt they will ever admit that they take their children for granted. I never would have said I did. Yet the big picture is different. The big picture is this, no matter how much they annoy you, test you, grate on your every nerve, they love you, no, they worship you. They will learn everything that is good about life through you. In them, you have the ability to see the world through fresh, imaginative, funny sparkling eyes. Through you, they will understand security, love and acceptance. Life does not have to be hard, life does not have to be a struggle.

Every morning you wake up and you have a choice, you can simply tolerate the people you love, or you can love the people you love.

It is easy today, and maybe tomorrow, however, I know soon the memory of my fears will diminish. Then I will have to make a conscious decision, I will have to remind myself, that this boy who literally swings from the rafters, and does flips off of the counter-tops, this boy who sets fires “by accident” and rides his bike like a daredevil, this boy is fragile. Life is fragile. And I will make the decision to smile, to take a deep breath, and to love every minute of it.

This post was originally published March 3, 2013. We have since had 2 more reactions to shots and the doctor has made the decision to lower the dosage. We still believe we are on the best path for his lifelong health.

Aw sweetie, tears. Life is so fragile and our little guys really test our strength in worry…my son has quite a few allergies, too, and I hate it. I’m so sorry he had a reaction to allergy shots, who would have thought! Love that this made you wake up and look at him with new eyes. Life IS fragile. Beautiful, but fragile. Hugs to you and your adorable son!

Your description of your son matches my description of mine so much sometimes, it is scary. Mine has spd, as well as allergies and asthma, although not to the extent yours does. I agree with you that we have to love the ones we love., but it’s nice to be reminded at times. Thank you for sharing.

I meant to say I’m glad you found me so that I could find you back…not that I’m glad you found me b/c you just so needed to find my blog–even though I’m glad you did that, too. Just wanted to clarify. 🙂

I’m so glad I found you too. Cause you are really funny and I really like your blog. And sometimes, well basically all the time, I could use a good diversion. Like now. Cause my son just spilled all his pasta on the coffee table. And I’m still typing….alright, maybe I’ll go help. (and thanx for following the rules, I’m pretty sure my son reads this blog behind my back)

Oh Jen. It’s not the same, I know this, because what Isaiah suffers from can be life-threatening, but as a mom with OCD and bibolar 2 I can assure you the feelings are similar. I can say this here because his ex-dad won’t find my here but I can’t blog about it. Noah too suffers from OCD/anxiety and ADHD (but I don’t doubt eventually he too will be found out to be bipolar. I inherited it from Grandma – bipolar ONE). Anyway, turns out for all these years he’s been treated wrong. He is a rare case that worsens with stimulants and as we increased his meds to improve him he finally ended with hysterics the likes of which we have never seen. We were 5 minutes from the ER for crisis intervention. We got an immediate psych visit with a sedating (doesn’t sedate him though) medication and he also had to have his classes changed around FOUR TIMES. He’s 13 by the way. I sunk lower and lower for weeks with worry over this precious boy who was suffering so badly, texting me during anxiety attacks at school. Jen, it was so terrible. Three weeks later, nobody recognizes him. He actually came downstairs crying just now because life doesn’t feel right. The calm actually made him worry. There is an amazing wonderful beautiful heart-wrenching peace in our child. No, he doesn’t need an epi-pen, but he still suffers on a different level, so in my own way I feel your pain, half-sleeping, wondering when it will happen again. Bless you. Beautiful post.

Thanks Kim! I think it’s a lot the same. No matter what’s going on with your kids you can’t help but lose sleep, and you never want anything to hurt them or make them feel scared. I have bi-polar 2 as well, and when I was untreated, my anxiety about him was debilitating. Now I have a better grip, but it doesn’t change reality. The fact is both our kids are lucky they have moms who love them so much, and who will advocate for them, and be there whenever they need it!

Our baby girl had her first allergy attack at 3 months. She woke up because she couldn’t breathe and wasn’t strong enough to cough up all the crud in her system. Scariest 15 minutes of my life. We lucked out and after we moved, her allergies seem to have dissipated, though still there. Hang in there! I still check her breathing, and she just turned 2!

I know, I am sure he’s gonna be 16 and I’m gonna be creeping in his room to make sure he’s breathing. I’m gonna frisk him to make sure he’s carrying his epi-pens. Basically I’ll stalk him until some woman I have approved of and thoroughly trained/conditioned comes into his life.

oh man! that’s so difficult. i’m stressed just thinking about you guys. but you’re a mom and you do what you have to do to take care of your son. it certainly keeps you focused on appreciating every moment. i try to the same. usually it works.

Great post, Jen. I think you captured it all for all parents w/ this bit: “Every morning you wake up and you have a choice, you can simply tolerate the people you love, or you can love the people you love.” Thanks for the reminder.

Life threatening allergies like that are so, so scary. My sister has a lot of them, and I remember my mom spent much of our childhood carrying around an inhaler, an epi-pen, and various other allergy accessories. I love your attitude here. Your son is really lucky to have such a special mom in his corner.

It’s so scary how your son has had a reaction three times to the shot! You are such a brave mom for continuing on with the treatment. As a fellow allergy sufferer, I know just how well those shots work, and I hope that Isaiah’s allergies will be cured soon!

What a beautiful sweet boy! I’m so glad he was ok. Scary stuff. I am so lucky my kids don’t have allergies but they have friends that come over with epi-pens. I just hope I never have to be the one to use it….

You’re right – you just can’t go there. The “what ifs” will eat you alive. Terrifying story. You are one brave mama. Thank you for the reminder that God has a plan for our kids and I’m not their God. I can’t hear that often enough. Great story!

Thank you! People ask me how I deal with it all of the time, and I say, “it’s just our life, what choice do I have” I’m not trying to be callous, but other than those terrifying moments, life is awesome 🙂

How completely terrifying. Sometimes I think our hearts can’t handle all of this but you told this story so well. And I can personally attest to the fragility of life, and/or it’s quality. We need to scoop up and appreciate every moment which acme through loud and clear here!

How terrifying! And how scary to have to put him back in the car seat (where you can barely watch him) and drive back to the doctor. I always worry about something happening in the car so that would have freaked me out beyond measure. I hope his next round goes better.

I’m an allergy sufferer, but thankfully I have never had a scare like this. I do remember asthma attacks as a kid, before I was even diagnosed with asthma and it was awful. I hope that he continues to show improvement with the shots and that he doesn’t give you any more scares.

I am not holding my breath about the end of the scares, here’s to hoping I just get better and better at dealing with it, right? However, there is an end in sight, 5 years of shots (which leaves 3 left) and we could be over the mountain!

Oh, man. That is just so hard. Hard doesn’t describe it. But I love your attitude about these challenges, and that life is fragile so every moment is to be lived. I think that we all need to remember that, and maybe get fewer reminders than you do of that because we aren’t dealing with anaphalaxis. (I totally would have had a panic attack.) Thanks for sharing and for being so positive!

Totally! I thought it would be the food allergies that caused the life threatening reactions! Never the shots. I even did some research, cause I can’t help but research every medical condition, and he doesn’t even have any of the red-flags for this condition. They even tested him for various different conditions and diseases to see if there was some underlying cause. Nope. Just a rule breaker.

Amazing how these events catapult us out of the day-to-day normalcy of life and focus us so clearly on what matters in life. Such a hard thing to go through, mama, but I love your conclusion that “Every morning you wake up and you have a choice, you can simply tolerate the people you love, or you can love the people you love.” Beautiful. Hope your little guy doesn’t have any more scares like that!

Thank you so much. We go in again on Thursday, and I have been thinking about it all day. I hope he doesn’t either. I feel a little sad for him because I don’t want him to be scared, so I have to hide my scaredness from him. I love him so much, and I know he knows that, but a little bit of me worries that he doesn’t understand why I put him in danger like this. I just hope some day he can see the big picture!

Oh, Jen I have had Lily have an allergic reaction once 2 summers ago and was so scared that I rushed her to the local urgent care and didn’t even wait for the pediatrician to have office hours. And I would so do it again if I had to. I am so sorry you have had to go through this, but so with you on they do need all our love and attention. You are a wonderful mother and never forge that!

My twins are currently doing food trials for a range of nuts they were previously thought allergic too and doing well.. so far no reactions.

But it’s spring here and one of them came in from playing outside COVERED from head to toe in hives and wheezing like an old man. I’d only seen her a few minutes before and she was fine! Luckily a big dose of antihistamine and some of our new super puffer had her back on track but now I am re-thinking whether we’ll trial the allergy desensitization… it’s an hour and half drive there and back every week for only a 40% chance of it working, but maybe that is better than not being able to play out side!?

Terrifying. So tough to push through for what is the best long term goal even though the path to get there sounds torturous. Strong mama! And peopke DO take their kids for granted. So the reminder of what’s important is needed. Thank you.

Oh my goodness how scary. Your end message is so true. I wasn’t great at loving my son today. I will try harder tomorrow, especially after reading your post. Thanks
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